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Has anyone tried Botox injections?

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LSchroeder
LSchroeder Community member Posts: 7 Listener
I was diagnosed in 2017 after 10 years & 12 doctors!  
Has anyone tried Botox injections?  My neurologist wants to try it.  I walk with a cane now.  I lift weights and have a personal trainer { my husband} six days a week.  I try very hard to strengthen my legs.  I would love to know if anyone has tried Botox.

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  • LSchroeder
    LSchroeder Community member Posts: 7 Listener
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    this is LSchrroeder again.  I forgot to say that I was diagnosed with HSP
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    @LSchroeder Hello and welcome to the community, I am a community champion here at scope. I cant comment on your query as I have no experience of botox but just wanted to welcome you. I hope some of our members will be able to share their experience with you 
  • Ails
    Ails Community member Posts: 2,256 Disability Gamechanger
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    Hi @LSchroeder and welcome also to the Community from me.  It is nice to meet you.  I too haven't had any experience of botox injections so unable to comment also.  Good luck with the injections though and I hope they help!  Please let us know how you get on with them.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
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    Welcome to the community @LSchroeder! I had botox when I was younger for cerebral palsy. How have you found them?
    Scope

  • LSchroeder
    LSchroeder Community member Posts: 7 Listener
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    Hi Chloe!
    I found a neurologist that specializes in spasisity.   I have an appointment on February 20th to have it done.  Will it help me to walk better?  I walk with a cane.  My ankles are so Spastic that I drag my feet.
    Last summer, at the pool, I developed blisters on the tops of my toes.
  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
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    Hi @LSchroeder, how was the appointment?

    If botox are done inline with physio you will get the most benefits. The amount of success is different between each person and will depend on your level of spasticity.

    Botox should help to relax certain muscles which can improve your gait if it was those muscles that affected the way you walk. 

    Really hope it was beneficial for you. :)
    Scope

  • LSchroeder
    LSchroeder Community member Posts: 7 Listener
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    Hi Chloe!
    The injections weren't bad at all.  I  start physio tomorrow.   I'm waiting for results.  The doctor started me out on a low dose to see how I react to it.  So far, so good. 
    I will keep you posted!
    Thanks,
    Laurene 
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
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    Hi Laurene, I was wrongly diagnosed with HSP for a few years......so I did learn about it.

    I have spinal Primary Progressive MS...there are similarities between the 2 conditions....especially that both are incurable!

    I get spasticity in my legs...but it only lasts a short while, plus I am a full time wheelchair user, so it wont cause me to fall.

    I have had botox for foot pain, but it didn't help.

    I have a friend with HSP and she has a baclofen pump fitted in her abdomen.

    She used to take baclofen orally but finds the pump so much better, as it delivers micro grams of baclofen right where it is needed. She loves it. It relieves her spasticity and stiffness.


  • LSchroeder
    LSchroeder Community member Posts: 7 Listener
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    So far, I'm just waiting for the results.  I have noticed little things.  The doctor told me it could take about two weeks.  He said the peak is at six weeks though.
    This was my first time & he did a very low dose in case my body doesn't tolerate it.
    So far, Ihave noticed that it's easier to work out.  I"m hoping for a little more.  Right now it's only been a little over a week.
    I will keep you posted on the progress.  
    Thanks for asking
    Laurene 
  • kimdyer18
    kimdyer18 Community member Posts: 52 Connected
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    hi L Schroeder I have hsp spg 11 i know the pain ur going through i haven't had botox but am thinking of it 
  • LSchroeder
    LSchroeder Community member Posts: 7 Listener
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    Hi there Kimdyer18
    I walk with a cane.  I'm hoping with Botox that I won't need it as much.
    It's too soon yet for results,  but I have my fingers crossed.
    This is my first time & the doctor used 400 pics.  I have read that at 600 CCS, the results are seen more.
    I'm thankful that my doctor is very cautious & conservative.  I don't need any "weird " side effects.  I have enough problems!  I will keep you posted on the results.
  • kimdyer18
    kimdyer18 Community member Posts: 52 Connected
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    u should go on Facebook there are few people on there that had it uk hsp 
  • LSchroeder
    LSchroeder Community member Posts: 7 Listener
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    Will do!
    Thanks!
  • kimdyer18
    kimdyer18 Community member Posts: 52 Connected
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  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
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    Hi @LSchroeder, thank you for taking the time to update us. I hope you continue to benefit from it. :)
    Scope

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